The Why, When and How of Pacing | Long Covid's Most Important Lesson
HTML-код
- Опубликовано: 9 июн 2024
- It's not overstating the fact to state that PACING is the singular most important management strategy for Long Covid, as well as other chronic fatigue related conditions. But what exactly is it, and how should we be doing it?
In this, episode 8 of our expert interviews series, Dr Asad Khan and I talk to an expert panel about the hows, whys and whens of pacing and how all of us could learn to do it better, avoid relapses and give ourselves the best possible chance of recovery.
The panel includes:
Prof. Todd Davenport, University of the Pacific, Dept of Physical Therapy
Sue Pemberton, Specialist Occupational Therapist - Yorkshire Fatigue Clinic
Darren Brown, Clinical Academic Physiotherapist - NHS
Ruth Ainley, Clinical Specialist Respiratory Therapist
REFERENCES:
Long COVID Physio resources:
longcovid.physio/resources
World Physiotherapy briefing paper on safe Long COVID rehabilitation approaches:
world.physio/sites/default/fi...
World Physiotherapy Day 2021 toolkit (all languages) :
world.physio/wptday/toolkit?l...
World Physiotherapy Day 2021 toolkit information sheets (English):
world.physio/toolkit/world-pt...
Brief Educational Videos for Patients and Clinicians:
workwellfoundation.org/educat...
One-Page Fact Sheets and Letters to Providers:
workwellfoundation.org/resour...
Resources for COVID Long Haulers:
workwellfoundation.org/resour...
Presentations for Clinicians and Interviews:
workwellfoundation.org/resour...
Peer Reviewed Publications with Full Text Available:
workwellfoundation.org/resour...
Peer Reviewed Publications without Full Text:
workwellfoundation.org/resour...
Continuing Professional Education:
- Medbridge Education Module, Part 1 - Introduction and Identification: www.medbridgeeducation.com/co...
- Medbridge Education Module, Part 2 - Etiology and Analeptic Management: www.medbridgeeducation.com/co...
CONTENTS:
0:00 Introduction
0:44 About the Panel
3:00 Darren's LC experience
5:45 What is Pacing?
9:24 Where does clinical help start?
17:10 What are the barriers to pacing?
20:40 The Energy Envelope
23:30 Heart Rate monitoring
31:40 The difficulties in practice
33:50 Good days and Bad days
37:55 Practical tips
42:50 What constitutes rest and how to do it
47:48 Conclusions 
Наука
It's devastating to think you won't get better, and the idea of pacing is scary, but healing is possible. It's taken me a long time, and I'm not fully there, but it's possible. I agree that reframing and learning what pacing is really helps. I also would say, i feel less lonely because I'm learning sand seeing more people dealing with this, but for as while it was horrible and very difficult to think there was nobody else in my circle. Off you are reading this, and you are going through the same, please know you are not alone, send little by little it will get better.
Thank you!!
@GalacticTr4veller Oh man I'm very sorry you have this though really really happy your getting the results of getting better ~hugs ~ ❤I have a post I did 8 days ago regarding my grandson. He's 22 yrs old and man got hit while over in Barcelona (well if you read post no need to repeat)in January - came home so now he's been dx'd for a few months & yeah with trying to help he did have seem to help, yay he's walking though it hit him hard and now he's barely doing anything and is rejecting from the team of docs that are on top of LC. their suggestions. He does have a list of things he can try and my son wants to do the pacing ~ I am ordering the book, my question for you is and it really is just asking your opinion, see, I'm so worried about his mental state, I know he's traumatized & because of the hit of LC, then the months of trying stuff then crashing and totally wiped out, what motivated you to get going (simplification)past yes the right word, devastation? If that part is personal, I understand. Because I can copy your comment, leaving out your name to show him. Well, sending you positive energy healing thoughts of your continued healing to your whole healthy being ~ mind body well your spirit is wonderful by sharing such positivity ~ 💖☮
“Fatigue is associated with lazy or crazy.” This hit so close to home and breaks my heart. First, because we live in a societies that are so productivity-driven that the idea of resting is pathologized, and second that being mentally ill is still shameful. The notion of pacing would be easier for most to grasp if rest was recovery was a more prominent part of normal life, and maybe productivity would cease to be the most defining factor in a lot of our lives (myself included).
My Granny and my Mother later, who was a nurse, always had a CONVALESCENCE period for any family member that had been poorly. A word that seems to have vanished.
Biggest barrier to pacing for me is feeling better and thinking I can push my exertion a little further.
I've had ME for 11 years and I can say with certainty that resting & pacing are the most effective ways to avoid PEM. The less you do, the better you'll feel. The hard part is making this consistent. That's where the discipline really comes in!
easily healed ,if you message me i will tell you how to clear the dead virus debris out of your system,the cause of your problems,low atp levels are robbing you of a life ,if you get the coronavirus you will be a covid long hauler,
I totally agree. Ive had mild ME for about 30 years, moderate for the past 12 and Pacing is the only thing that helps but it is so hard to do.
"pacing is the balance between activities and rest." Well put. I've built myself up from being barely able to walk to now having days where I hit 10k steps. Resting for me last summer was sitting outside with a book and then at then end of each chapter, pacing with a couple of hundred steps. I did my first day of 10k steps, 13 months post infection. I now feel like I'm close to full recovery. Does take a long time. Resting, pacing, a lot of fresh air, supplements, and lung strengthening tools etc, all helped me.
What about using the TV, internet, smartphone? Did you limit usage and how much?
@@celeryeater8137 yes, I watched a lot of tv while resting up. Box sets. Anything to distract myself from symptoms and pain. Also bought myself a tablet to play games on. Didn't really limit usage but did have a daily routine. Get up 9-10am, wash myself, head outside, sit and read, do some pacing and then at about 4pm, go to bed and rest. It's then I'd watch a box set or RUclips. It all really helped. A lot of people struggle with insomnia, if this is the case for you, suggest phenergan. It's an anti histamine so may help with some symptoms, but the added bonus is it'll help with sleep.
@@happyhero1985 Thanks for the quick reply. That’s good to know you could tolerate TV and games. What do you mean by box sets?
And im currently on Pepcid but ill have to try that phenergan anti histamine because i do have insomnia
@@celeryeater8137 box sets like tv series seasons. I watched many. Yeah, phenergan is brilliant. Really helps with insomnia. Slow and steady, take it easy. Check out the groups on Facebook for further support. Lots of help and advice on there.
If we find ourselves dreading minimal exertion…and seeing oneself going from able enthusiasm to exertion dread.
Delightfully comprehensive, good job presenters! Just wanted to highlight that for me, emotionally stressful situations probably contribute more to a crash than physical activity. I've had to eliminate or regulate certain people and groups as much as physical activities. I live by the "One Thing Per Day" rule. Sometimes the one thing is cooking a meal or taking a shower. On a good day, the one thing could be grocery shopping. This has helped me get beyond the guilt and shame that are such an energy drain themselves.
Physical pacing is fairly easy to manage, cognitive pacing is my biggest challenge. I did a puzzle yesterday and was completely exhausted afterwards!
I know, I get so bored I need to keep my mind busy some how
I do word puzzles like scrabble with competition in order to restore my full brain! There are times when I’m blank. But I’ve managed to improve my mind skills to gaining first place in my group! 😁
I work from home and it’s so mentally exhausting
This. How to pace cognitively when we rely on our faltering brains for income and survival. We can try to work from home to preserve and pace our physical energy but how do we give ourselves room for cognitive pacing (or crashing) when we have financial needs to meet daily? There seems to be no solution beyond becoming reliant on others to a significant degree. Feeling desperate.
This makes so much sense, in a competitive world where we are continually judged and made to feel guilty for trying to look after ourselves, like only we know how to.
Thank you for this video. Pacing has been a real challenge so far. It’s so easy to do too much when you feel good for a few days.
Could we get an update how the panel members with LC have been doing since it has been a while ago?
Thank you for gathering together such a knowledgeable panel of experts. This has been very useful.
I have been saying for over a year the best days are the worst days. On a bad day your symptoms will keep you in check. On a good day you need to rely on willpower and mindfulness. So it takes crashing over, and over, and over again to internalize that your capacity have changed and a cessation of symptoms doesn't signal a full recovery. The limitations are still there even when the symptoms aren't out in full force.
When I was diagnosed with ME/CFS twenty three years ago my GP (an enlightened man) told me to think of it as bankruptcy. You start with a very different level of energy to ‘normal’ people, you are already in the red or bordering it. So assessing how to pace should involve calculating what you have, what you need for essentials such as yourself (including meditation etc) and how much is left over for everything else in order of priority. Thinking of it in concrete terms helped a lot.
Very good advice - thank you Jan!
@@RUNDMC1 thank you. I should add that it involves not spending what you can’t afford, leave it on the shelf! It somehow becomes much more real when seen in these terms.
@@Beekind799 Don't keep it secret, share it for the world to see.
@@lordasaki can you not see the mesage below your message,i put the healing protocol up nearly every day ,
@@Beekind799 No, I cannot.
I don't use language like 'I'm sorry I'm tired'. I am much more specific - and using an HR/HRV monitor, I really don't have emotional energy to expend on guilt - I'm at my PEM threshold and I have to rest for safety reasons. End of discussion. There is no reason why I should feel guilty I'm following basic safety protocol for people with ME/CFS. End of discussion.
Couldn’t agree more
Thanks for recognising that it can take can take years to stabilise. I’ve been resting and pacing for a year with long covid and still have extreme relapses and symptoms out the blue it seems. Also fatigue management clinics tend to offer a 6 weeks program with a couple of 1:1s which may not be enough. It’s so complex and sometimes fatigue just dictates and manages you rather than the other way round.
Hi,what are your symptoms.and how you prevent relapses
I agree with you 200 percent been experiencing the same thing
I feel with you. 16 weeks post infection and I am still dealing with fatigue, weak arms, and muscular aches in my arms. Horrific. Right when I think I’m getting better I relapse. How are you feeling today?
I have to have a 20 minute walk once a week or my symptoms get worse. But I need 2 days of bed rest (22 hours flat on my back each day) to recover from that. This year I learned I have a certain amount of energy each hour not each day.
So I put on a heart rate monitor and do a 3 minute walk around the house. Then I wait on the couch till my average heart rate is 80bpm (this number will be different for each person) then I restart the heart rate session and do another 3 minute walk. Do this 7 times over 3-4 hours and I get my 20 minute walk in without needing recovery time the next day.
A very good solution!
Learning I needed to pace hour to hour and not day to day reduced my pain by 95%. For a decade I took 90 opioids a month. Now I just use alieve and Tylenol.
I already followed the previous tip. Make sure after an activity that you always finish with energy to spare . Don’t drain all your energy away. I found Pacing very difficult but you have to try. It’s hard to know what energy you might have available for the day and when you have gone too far exerting yourself. It varies day by day and week by week . But you have to try.
low atp levels are robbing you of life and energy if you message me i will show you the way
@@Beekind799 I’m interested in your knowledge
Pablo are you fully healed now? Any more symptoms?
Thank you so much. I cannot express how helpful your videos have been, especially this one and the one with the 10 tips. I am really, truly grateful.
I’m glad I’ve managed to help in some small way! Best of luck with your recovery Isabel
Darren, SAME SAME SAME.....didn't realize how much smack down I WAS CAUSING to myself being on my phone! Thank you Darren!!!!
I don't pace well.
Been doing this 2.5 years.
Modifie your actions.
Absolutely.
Just the term pacing, which I was not familiar with in this context, is a revelation. I don't know if I have long Covid or not, but it feels like that, and when I take time off from some tedious work, I tend to call myself lazy or escapist. That is psychologically draining. The term pacing feels nice and I am trying it out. Look forward to more exchanges on the topic.
So useful. Have found pacing so difficult. Finally 16 months in beginning to get it! Heres to a summer of chilling! Thanks to all involved.
Thanks Edward for your continued support!
Edward how are you now? Did you fully recover?
Thank you so much for helping so many! I am late to the party - living in NZ and we are definitely behind the wave that has washed through Europe. Feeling so lost until I found this - it has anchored me. The gift of having what I am feeling and experiencing validated. Thank you thank you!!!!
Best of luck in your recovery Roisin!
I cannot thank you enough for these videos. It's so incredibly helpful to hear from professionals and people with lived experiences of energy limiting illnesses. Thank you!
I've been using HR monitoring and it's been so incredibly useful. I'm also noticing that pacing is not one but multiple approaches for me, HR pacing, rest periods, and tools like a stool in the kitchen, my mobilty scooter, all these pacing tools and methods combined ate what's working for me and helping me to avoid huge crashea
Thank you once again. This is the hardest of all things and I didn't know that my target is much lower than I thought. And now I need a video on what resting is :-)
Mad huh?! Hope you’re doing OK Eva :)
Remember when we were in grade school, and we took naps! And after had milk and a snack! It was tought to take a nap, no noise, no book reading no nothing, just sleep. I have a hard time napping or resting, its not in my nature. And if I do lay down, I have something on my nightstand to play with or read! Its terrible! But with these symptoms of lingering covid, I am so weak at times I can't do anything, and I do feel guilty! I sure hope I get better soon! Thank you for all your help! You are all such wonderful people, caring people at what you do! Such kind hearts! Blessings to you all for making this video to help us all! Kindness will be returned i guarantee it!♥️♥️🙋♀️
U got mildly or severly infected?
We got this people !
What an eye-opener this video is, and what a gift. I learned so much, particularly about rest--what is and isn't rest--and about post-exertional-malaise. I now understand that I have been prolonging and worsening my ME or Post Viral Syndrome by starting back with exercise way too soon. I wish I had known this months ago! What a terrific panel, informed, articulate, and above all compassionate. I have bought the "Fighting Fatigue" book. Thank you very much for posting this! .
Yes “guilt” can be painful literally from our thoughts, but I recognize a swift rise in pain when stressed…
This video makes so much sense. I have not had COVID thankfully but I had a severe allergic reaction in March 2021 and since then I’ve experienced the same symptoms of long Covid such as racing heart and fatigue brain fog. Sometimes all I can do is lay on the couch in silence. Understanding the why is a huge help so thank you very much for this video. I have signed up for the Gupta Program and praying it helps!
THANK YOU all - watching you guys not only do you validate my symptoms but alleviate my guilt 👏👏👏👏👏
Dee di you fully recover?
@@janybekorozaliev9052 oh God no - I'm still struggling on through. Since having covid at the very beginning April 2020 my health as never recovered and I doubt it ever will. I've subsequently been diagnosed with Coeliac Disease Pan-gastritis and recently osteoporosis of the spine. Prior to covid I was a runner/ spinning classes etc etc now I'm all on taking my dog for a walk - I'm far from being recovered- its not even on the horizon 💔
Another awesome video Gez. Thank you for all you do in spreading awareness!
Thanks Gez for another helpful video and thanks to the panelist for taking the time to answer questions and share their knowledge!
Thanks Andy!
Gez, thank you so much fot sharing this. I can totally relate because every time I think I've fully recovered (since March 2020) I relapse after what is a less-than-normal activity level for me. Guaranteed, I've always been a super performer, yet this makes it even more frustrating for those of us who have functioned at a super-human level our whole lives and now have to deal with this crap.
100% with you there Barbara
Same here. So frustrating.
Barbara are you fully recovered now?
@ Barbara Warren
How are you feeling now? Did you recover?
Brilliant! This explains so much of my experience with long haul COVID-19. Today, I'm about 98% recovered, but it's been an assembly of trail and error information that works for me. Fortunately, I've been in a position to pace myself but dealt with guilt on why I took the downtime. Sharing these experiences with others has helped me stay focused on my recovery. Sympathetic vs Parasympathetic.
Thanks for the support bear!
@@RUNDMC1 watching your videos have also helped me tremendously with my recovery. Thank you for sharing so selflessly!
Nomebear are you fully recovered now? If so, for how may months have you been symptom free?
Great video. Probably the most important one you've made, that will help the most people.
What need is proper employment law protecting us, and financial help the government until we recover. I am on the verge of loosing my job and no cares that I am getting better, just really slowly.
Hence been forced back to work after I have already had a crash.
Yes indeed ! I think I have failed job interviews because I told them I had LC.
ruclips.net/video/M5j96FewIoY/видео.html
I’d watch a panel on long term disability insurance and employment law…
Thank you for this video, it's been really helpful.
I need to stop feeling guilty when I need to rest and ignore the voices that tell me I'm being lazy.
You do indeed Jimbo!
“We have a big book on how to treat long haulers but they are too tired to read it”. Fittingly, as a long hauler, I don’t have the concentration enough to listen to this 48 minute video. 😉 Will try to listen in bits.
I am treating many patients with similar symptoms who have been 'dismissed' by their doctors as it being 'in their head' and this so so so resonates with me! I feel for you- just as I feel so about my patients. They are going through a hard time and the journey will need a lot of work- pun totally unintended! That work includes rest! Really grateful for the depth and the empathy in your sessions; as well as the science and the logic to support the content! Would love to learn more... Thanks a lot! for your effort and for your dedication!
Thanks Nidhi!
Thank you Gez and the entire panel
It took me 4 months to learn this the hard way. It’s good to have it validated. Thank you
This was so extremely helpful. I am starting again with bed rest and only getting up to eat, monitoring everything to find patterns. Thank you so much.
thanks so much....Gez & Assad, you both have a heart of a bodhisattva!!
Fantastic conversation. Extremely helpful both as validation of what I’ve been experiencing and as a guide moving forward. Thank you very much.
Thanks for the validation of this battle and personal learning curve 👍🏻
Thank you for this video. Heading to month 7 of long covid and recovering from my 2nd major crash. I keep hearing pace & rest but had no idea how to accomplish this. Now I do. Thank you!
It’s not as straight forward as it might seem!
Today is the first day that I've had enough energy to listen to (not watch) one of your videos, and I'm so glad that I did. Nothing very new to me here after two years with severe long covid, but so much validation and it is the most that I have heard people taking who all really get it. Especially Sue, everything that she said really resonated with my experience. Thanks for making this, and for stopping it before an hour, will definitely check out part 2 and other vids another day.
So sorry to hear you’ve been struggling so much. Best of luck with your recovery.
This is the best video I’ve seen this whole pandemic on this topic. And thank you for breaking this into two videos.
Thank you Evin!
So eager to hear the second part,no doubt will fall asleep half way through as this.thought laying down with resp support would let me listen through. Was having lots of these problems before 'alleged' Covid and presumptive MG. Pacing has been frustrating, MD,PT needs to listen to this video.
Great talk from you guys thank you
Great video it certainly gives you a different insight. Ive had ME/CFS for 14 years and like many others rubbish at pacing. Sue I loved your book wish i had it 14 years ago!!
Spot on! All in and then recover. So true about overdoing it. Understanding the rest portion has disabled guilt due to not being able to accomplish.
Whenever I try to exercise at the same level as before my March 2021 hospitalization for Covid-19 (pneumonia, pulmonary embolism, etc) I feel HORRIBLE for a few days, all my long Covid symptoms come back in full force, and then some, and I have to rest completely for several days before I begin to feel better. I have a bit of weight to lose and I just can't exercise anymore. Scary and very frustrating.
Excellent discussion! I wish I had known this when I first fell ill with ME/cfs. Pacing is so difficult. As a single mum, without any support, I just couldn't pace. Only now, that they've all left the nest, I'm able to. 22 years later.
low atp levels is what is keeping your me/cfs condition in place,if you get the coronavirus you will be a covid long hauler,your condition can be healed in a short space of time,i know what keeps all post viral conditions and all chronic fatigue conditions in place low atp levels ,if you dont know how to address the low atp levels you wont heal,i can type out a protocol if you want me too,your weak immune system cant expel dead virus debris from your system,thats what a post viral condition is ,this is easily addressed
Oh, you know me and my medical history, constellation of symptoms, things I tried and didn't try? Righto!
we got this
@@prosperinfoella1636 No, you don't. So condescending to suggest those things to a patient over decades. And it seems you don't have the first idea what pacing really is. Rewatch this video. Stop gaslighting and victim blaming. Because that's what you do, with you toxic positivity.
@@AJansenNL What on earth are you talking about..I smell negativity. I meant we got this as in we can recover. You need to stop jumping to conclusion you lost soul.
Super interesting and thank you so much, yet again. I just wanted to share the fact that my long covid illness has been evolving over the last year in a much more linear way than what many long haulers seem to experience and what seems to be discussed here in the video: people having better days and worse days, days where they feel almost normal, and others with very clear PEM and therefore quite an up and down experience. For absolutely ages i was never really in a state where i would feel like ‘right, i almost feel like i want to go for a very short run, shall i try it and see what happens’ - I never got to that stage, i was just too drained to even contemplate going for a run, it didn’t make any sense to try. And when i did try a little bit more like a very gentle bike ride, maybe three of those over a week around christmas time, i think i did experience PEM, but it wasn’t like a massive relapse, just a slight increase in intensity of what i was feeling like anyways. Lately i feel like the physical limitations are less present but the mental ones remain and are the most debilitating, and there again they just are there everyday, in quite a constant way. I’m a year and 20 days into LC, but i relapsed with it suddenly, 3 months after ‘apparent recovery’ from very mild covid infection. If anyone wants to respond. No worries if not! I still think all this is very relevant so thank you..!
Jean are you fully recovered now? No mor symptoms?
Thank you for all your videos. Have helped me so much
Amazing, thank you so much for this 💛
Incredibly helpful
Thank you, Gez - and the whole panel (what a fantastic assortment of people to collaborate and contribute to this discussion). I really resonate with so many ideas communicated here: learning to rest, de-stigmatizing rest, changing expectations and perhaps training ourselves out of 'A-type' personalities and patterns, and really attuning to holistic energy management in order to support wellbeing and illness management and/or recovery.
I also reflected on how tricky this is, like - anything preventative can slip under the radar and be rendered invisible - thus, if one really masters the art of pacing and then is less symptomatic and more 'well,' others may not see or recognize the ongoing need for pacing.
I also learned and felt reminded of how activities like social media or stimulating entertainment can stress our system and to consider the nuances of exertion and rest.
Ongoing gratitude for your work and this service of education: you seem to continue to choose to protect and direct a significant portion of your energy and attention to be such a source of help for so many. I don't take that for granted, and I am deeply appreciative.
Thanks Nicola! Great comment and I hope you’re doing better these days :)
Thanks Nicola! Great comment and I hope you’re doing better these days :)
@@RUNDMC1 Thank you - I got sick at the same time as you, and I keep learning and experimenting. I find that I will have little relative upticks of improvement and then seem to plateau at a new level (with some ups and downs) - and then I keep letting time help, as well as tinkering with new supports. Hopefully, that slow trajectory will keep trending in that direction of stabilization and healing.
This is truly an experience that feels like the invitation is to let it change my life rather than fantasize or get frustrated that perhaps I can't currently (and perhaps won't ever) simply resume my old habits and baseline.
On tough days, I can still experience a little wave of hopelessness or grief - but on positive days, I feel hopeful for deeper recovery yet and even grateful for some of the transformative changes in my life.
I wish you ongoing improvement, too! I really can't thank you enough: you and your guests have been HUGELY instrumental in my ability to respond with agency and knowledge.
If you're comfortable, could you please send me your email? I might like to send a more personalized note of appreciation. (But no pressure!)
Take care, and thanks for your good wishes.
Another great video and the part of the recovery process I'm rubbish at (pacing) some helpful food for thought here to help me on my own journey to wellness. Looking forward to part 2. Cheers 😊
Thanks Sam!
Thank you so much for this informative video ..so much need it from us who have been told to pace ourselves but with no real understanding what that involves and in relation to crashes, from our part and shockingly theirs .
Great video, thanks. 8 months into long covid and have been 'pacing' for about 6 of those months. It definitely helps but so hard to do it consistently well. The video has given me fresh insights.
Michael how are you now? Back to 100% normal health?
@@janybekorozaliev9052 hi, yes I'm fully recovered now. Long covid for about 12 months and then in January I tried something called the Lightning Process which has helped me enormously. Some people are very cynical about it but my experience confirms that for some chronic conditions it can be very effective.
Hope you are well
@@michaelatkinson4240 that's good that you've recovered! However I am a bit skeptical of the lightning process, do you feel that maybe it's just lying to yourself or does it really cure all the symptoms of long covid?
@@janybekorozaliev9052In my case I have recovered from all of the remaining symptoms and I believe it is a real effect and not just a psychological trick. The science behind the LP is actually well established (neuro-plasticity and the placebo effect). I can understand the skepticism. If I hadn't tried it myself I would also be doubtful. It's not a miracle cure; it requires consistent application of the process over time - in my case about 4 months.
@@michaelatkinson4240 thanks for explaining! I'll definitely check it out myself as there are a lot of videos on it
Thank you all so much! This describes all I feel but unable to explain!
Thanks Justine!
Thanks very much for this excellent video. Much appreciated.
Thanks Alex!
Thank you so much for this. I am now 80% recovered after 16 months of long covid. I’ve been getting help with pacing (and mindset) for the past 5 months from an NLP coach who specialises in ME/CFS.
Where do u find one of these coaches?
Boxerdog mum did you fully recover and if so for how may months have you been symptom free?
@@janybekorozaliev9052 Hi, yes. I am fully recovered and leading a normal life. I’m back at work, walking my dog and practising difficult yoga. I’m not sure exactly when I recovered. It was a gradual process. It was hard work. I needed a very slow phased return to work over 3 months. I just kept slowly nudging myself forward. I initially didn’t have 2 “activity” days in a row. I had rest days in-between. The most important thing was that I was kind to myself. I talked to myself like you’d speak to a small child who needed soothing and gentle encouragement. I’ve been at work fully since January 2022 (I got covid in March 2020), but for the first 9 months or so we had no idea what long covid was, so all those first months were wasted. So you might recover even quicker than me. And during that time, when I was partially recovered, life wasn’t as bad as when I was really ill. So, yeah, you can do this. Good luck 👍🏻❤️
@@boxerdogmum583 What were your symptoms? And what did you do tô recover? I've been suffering for the last 5 months
@@jhonybraavo You name a symptom and I had it. I prioritised lowering my inflammation levels and getting out of “fight or flight” and into “rest and digest”. I ate a high fibre diet and took probiotics (kefir, sauerkraut, kimchi, kombucha). I took naps during the day whenever I needed them. I lay down and listened to a yoga nidra once or twice per day. I started walking slowly, for 5 minutes every second day, then after a week increased to 10 minutes, and so on. I sat in my garden every morning to get the morning light, and I did 5 minutes of positive self talk while I drank my tea. I nudged myself forward gently, but I didn’t push myself. If I made a mistake, I didn’t beat myself up about it (negative self talk keeps you in fight or flight). I deleted all my social media because there was too much negativity and too many scary articles in the long covid groups. I stopped watching the news. Be kind to yourself. Get rid of all the sources of stress that you can control. Find the best balance between activity and rest. You’ve got this ❤️
Thank you very much.
Good stuff as always! Many thanks, your work is so much more helpful than any doctor I have met.👍
Thank you Christian!
Im really THANKFUL that I found you! You have helped me so much more than the Doctors I have seen here in Germany... absolutely not empathy definally they don't take me serious.
☹ The doctors in the beginning were cruelly gaslighting me. Evil.
But I found one who is willing to to do the tests I have asked for. I hope you find some human beings and not robot doctors.
Know this video is old. Thanks for the validation of needing to rest after showering, eating and bit of morning routine 👊
😊Thank you so much for these infomative videos. It's like a breath of fresh air to discover you and to see that you speak my language. I've been trying to recover from Covid-19 since Oct. 2020 and I'm 81 years young/old. ❤
Thanks all,such important information 👍
Cheers Dave!
This was super helpful thank you!
Thanks Lauren!
Super helpful Gez, thank you!! They referred to watches that beep when meeting HR threshold. Can anyone recommend specific watches?
I also find with fibromyalgia is the humidity in the air. It took me many years to spot that trigger. Sometimes it can be very humid even if it’s not particularly hot.
I need to know there is a solution. I don’t have a life where “pacing”, laying down, doing nothing is an option. This video has CRUSHED me to the core. I cannot live this way. I need to know that in the two years since this video solutions are in place to get this virus out of my body.
Oh my goodness - my 22 year old grandson has long covid. He did have covid=10...fast forward he goes to college then over to Barcelona for a semester and feels "sick" like he thought he might have had food poising - he did see doctors there and was getting worse and wanted to come home. OH sorry this was in January - all I know from the beginning was that he lost weight, had pain, weakness and couldn't walk, smh this is killing me, so right now he does get exhausted, he's isolating himself and now I'm understanding the cognitive aspect of things along with his fatigued. Not sure what I expect why I'm posting on this particular video, because it's a 2nd one. I will be sending this to my son. What I wrote is all I know..love my son though want more information, yet I understand his position also. Thank you all ~
Gez, honestly, as a seasoned athlete, you are one of the few people in the entire world who actually understands, and you are gradually connecting with the other super-performers in the world who truly understand - unfortunately, the professionals who are themselves long-haulers and can no longer live their lives and careers just "theorizing" based on old paradigms. They are now the heroes bridging the huge divide between those who know and those who just think they know.
This is certainly a brave new world and intersection of different forms of medicine!
I’ve got ADHD so trying to manage my time around both long covid and ADHD afternoon energy crash is hard work. Especially as a parent to 4 and 6 year old. I tried to carry on with my evening yoga/gentle exercise but I found that too much so then I was racked with guilt that being over weight made my covid worse but I can’t exercise to try and help me be fitter. I feel like I’m finally getting a balance but gah it’s hard trying to balance life and everything else and rest!
Gosh Bex - I’m not surprised pacing is hard for you!
With you on the ADHD bit. It’s a double challenge for sure.
Bex did you fully recover?
ADHD is a risk factor for long covid and I’d guess struggling to pace ourselves might be the issue. Not sure if having kids is a risk factor, but I’d be surprised if it wasn’t :-0
@@jamiejones8508 since I wrote this I’ve had my ADHD medicated and things have vastly improved. I haven’t gone back to my old workout routine but fit regular exercise into my day to day life cycling most places and walking.
I find I have nearly zero long covid symptoms now too! What a difference a year makes.
Hey Gez one again thank you for the video. It really puts some of the things in perspective. Your videos have helped me trememndously in my own journey; Im about 9 months in. May I ask have you started running at all? Thanks
Not running yet - still being very careful about that!
Gez started posting these video’s about 14 months ago, when so many of us had no idea what was going on with our bodies and why we didn’t seem to be recovering from Covid. The video’s were a lifeline for us, just knowing that we weren’t the only ones suffering, and knowing other people were experiencing similar problems. He used his limited energy to help all of us, by trying to give us information. I feel that if it helps him to have ads in the video, I’m all for it, because I know there are thousands of people that have benefited from Gez videos. I’ll never be able to thank you enough Gez.
This has been such a help. I am going to send a link to the long Covid clinic people I deal with on line. They are urging me to exercise even though i have found it makes me crash. My comments about pacing fall on deaf ears.
I found it helpful to think of resting as ‘recharging’. Somehow that feels more like I’m doing something useful by not doing anything! And thinking of my energy levels as a battery that I need to keep topped up regularly. If I let it go into the low-power zone I can’t function and then need to rest for longer.
Agreed!
Right. that is exactly how it works. You deplete the ATP and then need time to recharge your battery. Long time ME/CFS patient.
Thanks 😊. March 2020. Here. 9 weeks ago brain started functioning.. what a devastating virus
Wow! Excellent for me. I will need to replay a few times. I like detail. Do you have a “manual”, book or pamphlet that summarizes? I think Ruth said it great amidst professionals … but it’s a ton of info …
It’s all in The Long Covid Handbook!
This is really good stuff. Annoyingly, I have to stop and rest 10 minutes in,grrr. BRB, I hope!
Sorry Kay - take your time!!
Thank you again, Gez! Usefull information, like always!
Thank you, as always!
Thanks!
Thank you so much Geeta!
So great to know what I am going through as a long Covid victim is totally "normal" ( I had a narrow escape from ICU but was nearly 50 days hospitalized) . I am fighting this since early April 2021, so 6 months into it. Hearing you experts confirm my own observations was simply great! Thank you for sharing your knowledge on this subject. A few notes struck familiar chords: 1) recognizing and accepting physical and cognitive limitations and setting up barriers for myself based on these, for myself, and between myself and others 2) knowing my organs intimately (in my case my digestive system). Eating has to be thoughtful, and free of stressful conversations so as not to consume so much energy. 3) finding physical activities that generate oxygen ( yoga and walking in open areas. Both activities require deep breathing but don't stress me out). And 4) doing the things I really like and am good at, which give me security and confidence. This video was so good!
Thanks!
Thanks Judy!
Thanks Gez! I find it so hard to rest! Some good suggestions from the panel! Personally, I have found that listening to Yoga Nidra meditation videos to be the most restful. It seems to both rest and help with the neurological issues. It also is active mentally without taking energy.
Yes - great advice!
Youre looking really well. Hope youre feeling it too.
Thanks R - I’m definitely doing better!
I've Stiff Person Syndrome, 32 years. Now, pt & mindfulness; Doug Baker has a book "Walking Mindfulness", are helping me find new pathways so my thoughts will be calm & not overwhelmed & the body that's24/7 healing, does so easier. The best fact: the cloudiest days, weeks this earth goes through, the sun's still up there & when the storm's over, there's the sun & the same with illness - you'll see the sun or some light & the clouds return, maybe for a long time; our brains are like the sun. do whatever your individual brain needs to help; your mind body & spirit. Wishing you all moments of 🌞as you heal.
I am still in absolute denial that pacing is the only option for the rest of my life. I’m having to do it for now but it can’t be forever.
The better I feel, and the stronger, there's a tendency to forget to manage and pace with the result of physically running oneself down. Managing to lose 45 kilos in two years, I'm now a thin, normal sized male. There's more energy, I recover quicker, but it's frustrating dealing with aftereffects.
I find your videos to be very useful information. Though it is all over the place. Like if this is episode 8, where can I find all the previous and the next one? Better labeling (or playlists) would be very helpful. Or linking in the description, of course. I have been trying for a week to track and get certain topic from the beginning. It seems impossible 😅
The videos aren’t all in order - although some are of part of a specific series. I do have an LC playlist so you can work through that in chronological order 👍
Perfect timing. At least for myself. I'm mostly cured at least I think I am. I'm currently in Spain taking care of a family member (not COVID related).
Before COVID I was cycling quite often. Had about 57 resting HR so I was in relatively good shape. Got COVID back in 12/20. Long hauled. Took me about 4 months to get better.
Now that I'm in Spain I'm trying to continue my cycling but this has proven to be challenging. I cannot perform like I did before COVID. I cannot get up any hills and nothing in Spain is flat. I don't know if it is that I'm out of shape again or of I am experiencing COVID damage.
Example, I tried going up a steep hill and my HR easily got to 187. I would have to stop, let my HR go down and get back at it again till I finished.
It's so frustrating because I want to go and I feel like I'm holding back the other people in my group. I feel like I'm fat and lazy. At least I feel that is how people see me. I want to go but my body simply does not want to go.
Take it very easy Mary with the cycling - you aren’t recovered *enough* yet for that level of exercise!
@@RUNDMC1 thanks I will now. I thought I was fully recovered till I came here. It is so frustrating seeing everyone else perform at their best while my heart feels like it's about to explode.
Be careful. I was progressively getting better last fall after 8 months of gradual improvement. I tried to do long hikes and I would hit a wall and my heart would race. It caused me to "crash" and I felt like I was having to start over!
@@Unitedstatesian I think it is important to look at this almost in the context of Epstein-Barr virus. Obviously the mechanisms with which the virus and the inflammatory stage activates the TH1 pathway is different, and the physiologic manifestations that occur with exercise or increased heart rate are different, that the end outcome is similar, one step forward, three steps back. The more you do today, the less you will do on Thursday and Friday. I would recommend looking into protocols for mast cell activation syndrome, Dr Bruce Patterson and Dr Tina Peers have videos discussing this aspect of the inflammatory process. Increasing Your heart rate is like pouring fuel on the smoldering embers. They burst into flames again and your body becomes overwhelmed. There is a very good analogy somewhere in this thread about someone having a broken foot or leg. Even though they may look healthy, there is no possible way they could be expected to run a race with a bone that has not yet healed. It would be a minimum of 6 to 8 weeks before any type of activity would even be considered. The devil with postcovered symptoms, is that you look totally healthy, normal, and your brain tells you that you can do these things, until you do, and then there is a rude awakening :-(
Mary are you fully recovered now? If so, for how many months?
I’m Covid positive end of April 2021. I recovered in 2 weeks but then exercised and crashed. So I’ve decided to rest full time for 2 months. Nothing more than walking around the house. Hope that helps speeds the recovery up!
Very, very good shout Stuart
Depending on how severe it is, don’t feel bad if you have to break up walk around the house, too.
I was the same late April, and only had a slight fever for 3 days. But I had a racing heart was my first symptom. Then once I felt better and it was about 3 or 3 weeks, I started to do my regular activities and boy did I crash. I had some side affects from the meds the doctors were giving me for the fast heart rate and I figured that was why I was so weak in legs and arms and felt luke I was gonna black out all the time. But then saw all the info on fatigue and long covid! I dont think we could say that we are long covid yet. I heard them say 8 months or so is long covid. So maybe we have a chance!!! I am starting a high vitamin C regime once I get my gut healthy then I am gonna apply a protocol of super foods to help my immune system! Good luck!
Did you manage to rest for 2 months?
@@andylay6745 yeah, pretty much. I did some light walking too
Seems to be a quite strong variation between resting plus 15 as opposed to 220- age x .55 , with the former quite lower than the latter.
I'm giving HRV training a try.
Well done for putting this together, I've spent years and thousands of pounds learning this information. If I'd known this at the beginning I'd be a lot longer along the journey. I know all this stuff works as I was up to 95% healed and then I had the COVID jabs and it all went to shit lol thank you, I've dug my Garmin watch out as never tried heart rate monitoring
Great to hear from the American guy that people with chronic illnesses who have to pace are seen as lazy or crazy. Just goes to show how badly treated people with ME and CF have been. Perhaps a public apology from Physios would be a good idea.
Brilliant - thank you - I can't work out how to find Part 2 🙆♀️ can someone point me in the right direction please? xx
It’s not uploaded yet! Will be published on Friday :)